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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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ME Awareness Week - Walk for ME

Discussion in 'Fundraising' started by Graham, Mar 2, 2013.

  1. Graham

    Graham Senior Moment

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    In anticipation of the ME Awareness Week, 6th-12th May, Luke and Ian have set up a website to encourage friends and relatives of people with ME to raise money for biomedical research. Luke found that many people asked him what they could do to help, so he came up with this idea. Primarily it is UK based, but worldwide participation would be more than welcome!

    http://walkforme.co.uk

    As we all know, the amount of money spent on biomedical research has been minimal. You may have seen the recent video that Ian and I released on US funding:

    Money and ME

    I could have added a bubble to represent the amount of money spent by the UK government on biomedical research into ME in all the years up to 2011, but I couldn't find any such support at all. It's largely up to us to build up the pressure and the momentum.

    Thanks!
     
    taniaaust1, golden and Sasha like this.
  2. golden

    golden Senior Member

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    Graham,

    I dont know if this counts but have you seen it?

    http://www.forme-cfs.co.uk/research.html

    Its Perrin trying to get the doagnostic and treatment technique available on the NHS.

    I bet PR will be super dooper at properly evaluating all the studies so far.

    He has done a couple of tiny successful double blind studies with also MRI scans etc and now needs 60,000 pounds for a larger clinical trial to get it approved.
     
  3. Graham

    Graham Senior Moment

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    No I hadn't seen it. Have you any idea where the full study is available? The website lacks a lot of the details (such as which questionnaires were used).
     
  4. golden

    golden Senior Member

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    http://www.theperrinclinic.com/research.htm

    Is this link any good????

    If its not, I imagine if you emailed him directly. Presumably if his aim is to be accepted by the NHS he is following guidelines layed out by the NHS - but not sure what they are either...

    I havent looked at the link yet myself....
     
  5. Graham

    Graham Senior Moment

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    Thanks. That's the one. Now for a slow read.
     

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